Coping With Chronic Illness - Your Team Must Believe You First

“I wouldn’t worry, I think you’ll get better.”

This is what the disability lawyer told me as I sat across from his desk, shuddering uncontrollably from the effort of sitting up for an hour.

What I should have said was, “Oh really?  What exactly makes you think that?  Tell me why, after 15 years of being ill and no available treatment for my disease, you believe I will magically just get better.  What exactly do you think will change?“

That is what I should have said.  But I didn’t.  I stayed quiet.  I did look disapprovingly at him – but that is the best I could do.

Coping With Chronic Illness - I Am Not Lazy

I'm not Lazy, I'm sick.

I can’t tell you how many past journal entries started with, “I’m so tired.  I feel so lazy” followed by pages and pages beating myself up for everything I wasn’t doing and describing in detail exactly why I was lazy.  

And of course there was the requisite new schedule on the last page, drawn up and ready to help me use my time wisely.  Every moment of the day accounted for.

I didn’t know myself or my illness very well then.  I know them better now, though, and this is what I have discovered:

I am not lazy.

Living With Chronic Illness - The Interesting Life Plan

The Interesting Life Plan

A few years ago, let’s say seven or eight, I decided that what with one thing and another (in other words, debilitating illness) my life was not interesting enough.

Now, it’s not that I wasn’t busy.  But something was lacking.  I wanted to be engaged.  I wanted to look forward to something.  I wanted some variety and color.  I wanted a little less predictability and a little more of the unexpected.

Living With Chronic Illness - What De-Cluttering, Organizing, and Simplifying Really Mean

Coping With Chronic Illness - What De-Clutter, Organize, and Simplify Mean

I do not thrive in cluttered surroundings. 

I hate living with over stuffed closets, shelves, and rooms – they exude a feeling of chaos, of imminent attack, of sensory overload.  

They make everything more difficult and complex for me.  Getting dressed becomes an ordeal.   Thinking is harder.  

And I trip a lot – which is bad for someone who can barely walk. 

5 Ways To Maintane Independence While Chronically Ill

I know, I know – we don’t want to be independent.  We want to be inter-dependent.  No man is an island and all that.  I agree with that.

I’m not flying in the face of that wisdom when I am talking about this issue of independence.  But we are looking at things from the viewpoint of a person who is chronically ill.  This is a person who’s body betrays them daily.  This is a person who is forced against their will to rely on people all the time for basic necessities.  Their world, their dignity, and their sense of self are being assaulted.  

10 Ways To Make It Through The Summer Heat While Chronically Ill

10 Ways To Make It Through Summer

Where I live it gets extremely hot during the summer, and the summer lasts a looonnggg time.  

 

My illness causes organ failure.  And the first organ to go is the skin.  This means that my body can no longer regulate temperature the way it should.  Usually, if you get hot, the heat escapes through the skin.  But my skin no longer serves that function efficiently.  So the heat gets trapped under the skin and I can’t cool down. My core temperature rises.  And I can no longer function.   

Coping With Chronic Illness - Exercise Part 1 - Is it Good or Bad?

Is Exercise Good Or Bad for the Chronically Ill?

If you have a chronic illness you know you should exercise, right?  You know it, I know it, we all
know it.  Healthy people should exercise.  Sick people should exercise.  Old people, young people.  Everyone should exercise.  It’s good for you.

And yet… it’s just not that simple.

The challenge

Sure exercise is beneficial – but how do you do it, where do you even start when you are:

Feeling completely and utterly horrible?

Too weak to stand, walk, or even sit up for any length of time?

Coping With Chronic Illness - Caring Too Much What People Think, How To Overcome It

I can’t hide my illness anymore.  I can’t push to look normal for an hour or two anymore.  It doesn’t work.   (At least not right now.) 

So, this year I have had to confront my fear of people.  I’ve had to confront my own inner need to be accepted and loved by EVERYONE.  I’ve had to start realizing that I care too much what other people think.  (See part one of this series for adiscussion of why that keeps us sick.)

Coping With Chronic Illness - Caring Too Much What People Think Keeps You Sick

It is a natural human desire to fit in, to be respected, to be loved.  We naturally care what others think about us.  And that is not wrong.  But there comes a point when we care too much. 

For people with chronic illness just getting out of bed or out of the house very difficult.  We may worry about looking weird to others or worry about their opinion of us.

Have you ever had one of these thoughts / fears?

·         They will think I’m lazy

·         They will think I’m faking / malingering / they won’t believe me.

·         They will think I am looking for attention

·         They will think I am worthless

Coping With Chronic Illness - When I Have No Brain and No Body

Coping With Chronic Illness - When I have no brain or  body

Sometimes my whole body feels as though it has been run over by a semi truck.  Even my brain hurts terribly, like it has been used as a basketball and is swollen and bruised all over.  The slightest rollover of thought is excruciating.  I become very sensitive to light, touch, and sound.  This may last from a day to several weeks or months before I get relief.  

During these time periods I may be bed-ridden.  And I am physically, emotionally, and mentally in a very low state.  I can’t really function.  At the same time, I am not able to sleep all of the time.  So, I just need to be distracted by something completely undemanding, requiring no strain on my emotions or mental faculties.  

Coping With Chronic Illness - Other People Have Problems Too

Everything seems to be hard for me and requires a lot of thought and planning.  For goodness sake, washing my hair requires a plan of action and plenty of time afterward to rest.  Because everything is harder and requires more thought it is easy to become self -centered, focusing only on what I need and want, thinking only about what is happening to me.  

Also, illness often brings isolation.  Keeping my own company so much makes it easy to think only of myself.   

One problem with being too concerned with ME  is that I tend to downplay other people’s problems.  I never think they are as bad or important as mine.  This is simply untrue and unfair.  Their problems are usually just as valid and often very painful and frustrating.   

Coping With Chronic Illness - Dealing With Its Unpredictable Nature

Be Flexible Like A Gymnast

Unpredictable Chronic Illness - Be Flexible.

“Today is canceled, go back to bed.”  

When you live with an unpredictable chronic illness you really do live day by day, hour by hour.  At any given moment you may have to chuck the plan aside and go to bed.  You don’t always have control – even if you’ve been trying to be good and take it easy and take care of yourself. 

Coping with Chronic Illness - You Do Not Need to Justify Your Existence

Coping With Chronic Illness - You Don't Need to Justify

“Never make excuses.  Your friends won’t need them and your foes won’t believe them.”  -Wooden

With some of my old friends I always had to excuse myself for being ill.  I had to say I was sorry to them over and over for something that wasn’t my fault.  And it made me angry. 

Coping With Chronic Illness - Talk. And Talk Some More.

Talking Is Important During Chronic Illness.

I am not a big talker.  I prefer to listen, to watch, and to work things out in my head.  But coping with illness involves many different emotions and I just can’t seem to sort through them all on my own.  

 Somehow, just speaking the words out loud to a trusted person clarifies things.  And because the person(s) is trusted I don’t have to worry whether I am right or wrong, betraying a flaw, being little or petulant or negative, whether I sound like a crazy person.  They will not form a negative opinion of me based on the wild talk of a grieving person, or the confusion of an overwhelmed one.  They will listen and they will help me find sanity again.

Coping With Chronic Illness - I Can't Do It Alone

Coping With Chronic Illness.   I Can't Do It Alone.

I have a lot of friends, whom I love and care about and who love and care about me.  But I have a small support group, the nucleus of my everyday life, who are my inner circle.  I could not do it without them.

My inner circle helps me with:

Friendship Is a Basic Human Need Part 4 - How to be a Good Friend to a Friend Who is Chronically Ill

This post is in response to a reader question, which I loved.  Jo, from All The Blue Day, asked how to be a good friend to a person who has a chronic illness. 

If you know someone with a chronic illness it may be difficult to figure out what to say or what to do to help.  Ultimately, knowing that you genuinely care is the most important thing.  Don’t hold back from them just because you are afraid of saying the wrong thing.  But, these are some basic ideas that it would be good to consider.  (These are good suggestions whether they are a new acquaintance or an old friend.)

Keep in mind:  This list may seem long, but the suggestions are not very hard.  You are probably already doing several of these things.  Either way, just try to incorporate one suggestion at a time.  

Coping With Chronic Illness - 18 Ways to Ward Off Sadness

Coping With Chronic Illness - How to Ward Off Sadness

It is not practical to expect that every day or every moment I will think positive thoughts.  Dealing with our illnesses is going to get us down sometimes.  And I have periods of time when I do not have the physical, mental, and emotional strength to fight off negative feelings.  That is just life.  Sometimes we don’t so much cope as just exist.

I have done my share of just existing.  And then, when my inner strength has been renewed, I feel like I have to re-learn  how to live and how to cope.   So, I keep lists.  I have lists reminding me what foods I can get for myself at different levels of health.  I have lists reminding me how to be a friend.  I have lists reminding me how to contribute to a good atmosphere in my home life.  And I have a list reminding me of what helps when I am down.  These lists are really plans of action, or battle plans, for when I have the energy to fight.

Coping With Chronic Illness - 3 Ways To Advance In A New Direction

Accepting our illnesses is not a sign of failure.  It does not mean we give up.  We simply advance in a new direction.

It is true we may have lost much.  (See It’s Ok To Grieve Your Losses.)  However, we also need to understand what is still there.   Here is a plan of action for moving forward.

Evaluate your condition

•    Think of what you need to alter and then seek to change what is changeable.  This will help you reclaim some control.  (Some things you may be able to change are diet, sleep habits, mental attitudes, household arrangements, healthcare, work, exercise, daily activities, the way you get around, the way you care for yourself, etc...  With the help of loved ones, perhaps you could set up some systems or strategies to help you accomplish what you can’t do alone.  See also the posts under Energy Economy for suggestions on changing what is changeable.)

Coping with Chronic Illness. Accepting Reality - What It Does Not Mean.

Accepting reality does not mean giving up hope 

I want to be clear.  Letting go of the dream and accepting reality does not mean giving up hope.  It does not mean giving up on life.  And it does not mean that what we can do now won’t change in the future.  It is a tricky balance, I know.  But, never, never mistake being reasonable for giving up.  

Accepting reality is not failure.  It may feel like that at first.  But that is not what it is.  It is advancing in a new direction.  Because we can only move forward when we have accepted what we have to work with.  

So, you have finally started to see your reality and you have realized that this dream or goal is damaging to you or your family, or is simply unattainable.  Can you substitute a more reasonable goal that will keep you in line with what you love, but actually be possible for you?  We want to do our best.  That is all that the people who love us expect from us.  

Coping With Chronic Illness - Let Go Of The Dream, Accept Reality, And Be Happy (It Breaks Your Heart And Then Rebuilds It)

Why cherishing the dream is counterproductive:

 

In my last post I wrote about my efforts to be real with myself and others and to stop lying.  Part of telling the truth and letting go of the lie has involved giving up some of my dreams and perceptions of myself.  

I had unrealistic expectations and I pushed myself to reach them no matter my level of health.  And when I failed over and over I berated myself horribly.  I couldn’t seem to give them up.  I couldn’t’ let myself see my reality much less learn to accept it.

The trouble was that I still retained the expectations and goals I had when I was healthy.